Tips & Tricks When Travelling with CF

Updated: Oct 13, 2018

I've had some amazing opportunities over the last three summers, visited some incredible places & met so many lovely people.

Travelling with CF was always a worry for me. But now I've done it, I want to inspire and help others with CF have the confidence to pack your bags and head off exploring!

I've been all over Indonesia, Northern Australia, Sardinia, & done 2 full summer season in Greece. Preparing before hand, writing numerous lists and getting all my medication (and big quantities of it) was the hardest part, I needed to start this well in advance.

I would advise having a chat with your local pharmacy, and telling them about the trip you're going on. I believe this is super important as they can also advise you on suitable vaccinations, and better ways in which to travel with large amounts of prescribed medication.

Here are my tips and tricks in making it easier to travel with CF;

Preparation

  1. Vaccinations - make sure you have been given the correct information regarding vaccinations for the trip. With having CF, I had to look at the "less common" vaccination options as us CFers are more prone to catch infections and need to consider any issues.

  2. GP/CF Consultant advice - speak with your CF team before hand about when and where you may wish to travel to. I was advised to have 2 separate courses of IV antibiotics before leaving the UK so I was in tip top condition. 

  3. Malaria tablets - Super important if you are travelling to any high risk areas 

  4. Safety week - Always pack an extra weeks worth of essential medication with you. Just in case of delay, flight changes, or illness. Also, spread your medication between bags if possible to avoid issues with lost luggage.

  5. A course of antibiotics - I took one box of oral antibiotics with me just in case I could feel I was being run down, started coughing or could feel a chest infection arising.

  6. Paperwork - Ensure you have an up to date list of your medication and summary of your current treatment regime from your CF team. Take a copy of your repeat prescription form too.  This may assist when passing through customs!

While travelling

  1. Creon - You're going to be taking a lot of it! So ask your dietitian to prescribe 25,000 creon capsules not 10,000. You will need more pots of 10,000 and will go through them quicker so 25s is the way to go. 

  2. Carry your insulin pen! - You never know where you'll be at the time when you'll need to take your units. I was either in a hostel, on a plane, train or coach at 8am so I knew that my best bet was to keep it close by me each day. 

  3. Keep organised - whenever you have a spare minute in the evenings with your luggage, just sort all excess cardboard boxes, plastic bags and pre mix your nebuliser if needed. 

  4. Week by Week containers - following on from being organised, take containers for your tablets! This was a life saver and one of the best ideas I had! Not for creon, but for antibiotics, vitamins, intraconazole, omeprozole etc . Each Sunday evening I would sit down on my bed and pop out all my pills for the week ahead. Then I would take the small container for each day and put it in my rucksack. So wherever I was for breakfast, lunch and dinner I didn't need to go back to my room or find my big luggage bag, the medication would be sorted and with me. 

  5. Washing equipment - take a small ice cream container to use as your mini washing up bowl! It's great size to fit all the parts of your nebuliser, basket etc, and isn't too big to squeeze into your luggage. 

  6. Consider that some medication may need to go in the fridge - you may need to be resourceful in locating a fridge to store medication. or freezer for ice blocks in some remote locations. (I used the ice cream parlor or fishmongers next door to my hostels) Don't forget to take ice blocks and cold bag. 

  7. Take a mask - This depends on where you're travelling to, but I would advise taking an air pollution mask. I wore this when travelling through smokey or highly polluted areas, the jungle and small aircraft. Also on the plane!

  8. Sharps!- keep all needles (mine were from blood glucose monitor, port flushes, insulin and prepping nebuliser) in one place. Take lots of spit sample pots and use them as a mini sharps bin.

So there we are, it's possible to travel with any condition, no matter how much medication you need. It can be done!

When I have been on season I took 3 months of medication out with me & then either got family to send more out, or I'd go home to stock up.


I'd love to hear where you are planning on travelling & if this blog helped you!


Any questions please leave in the comments below. 

I'll be posting photos of my travels soon! 

Nicole x 



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